Diagnosing End Stage Dementia I am going to talk about the end stage when a patient is known to have advanced dementia. Dr Aruni Wijeratne Consultant in Palliative Medicine Epsom and St Helier University Hospitals NHS Trust & Princess Alice Hospice

Prognosis Median survival vary from 5 - 9.3 years After institutionalisation; overall 2 year survival 43% (Koopmans1994) 28% die in 6 months (Mitchell 2004) Recurrent infections and febrile episodes commonly occur during the final stages of dementia Benefits of treatment unclear

Prognosis of acutely ill patients with end stage dementia Survival of patients following hospitalisation for hip fracture or pneumonia3 Patients >70 years advanced dementia = 38, cognitively intact= 59 6 month mortality; end stage dementia and pneumonia = 53% vs 13% for cognitively intact patients end stage dementia and hip# = 55% vs 12% for cognitively intact patients (Morrison et al JAMA July 2000) NY Hospital This is partly because patients with advanced dementia have little physiological reserve, and so are living day by day near the threshold of decompensation.

End of life care in dementia Approximately 100 000 people with dementia die each year in the UK4 (490 000 total deaths 2010) Place of death – 59% care homes, 32% hospital, 8% own home (England 2007-’09) Prolonged terminal phase in advanced disease Patients receive less pain control, undergo more burdensome interventions and receive less hospice care 5 Figures are however inaccurate as dementia is not often listed as contributory to the death. Place of death of those certified as having died of AD, dementia or senility. Although patients with advanced dementia have a high prevalence of symptoms similar to cancer;

Access to palliative care Doesn’t fit the traditional palliative model Need to work in a different way as many patients will have lost verbal communication skills and capacity Patients may be in the terminal stage for a long time Fear of being inundated Lack of evidence base for palliative care in dementia Fear of being inundated by numbers submerging other patient groups.

A clear sudden transition to palliative care is rarely seen.

Access to palliative care Eligibility criteria for palliative care should be guided based on need rather than expected length of life. Moderate to severe dementia With Persistent distress Complex family needs Or Concurrent condition needing palliative care

SURREY END OF LIFE CARE CQUIN Alexandra Ward, Epsom Hospital Identify patients who are in the last 6-12 months of life Have discussions to ascertain wishes for EOLC Share information with care providers Education programme

PROGNOSTIC INDICATORS FOR END OF LIFE CARE It is not always easy to recognize when a patient with advanced dementia is reaching the end stage especially as the p[atient may already be frail and have restricted physical activity.

1. Look for two or more general clinical indicators of deteriorating health Performance status poor or deteriorating Two or more unplanned hospital admissions in the past 6 months Weight loss (5 - 10%) over the past 3 - 6 months and/or body mass index < 20 Persistent, troublesome symptoms At risk of dying from a sudden, acute deterioration. Lives in a nursing care home or NHS continuing care unit, or needs care to remain at home

2. Now look for any clinical indicators of advanced conditions Advanced dementia/ frailty Unable to dress, walk or eat without help Eating less; difficulty maintaining nutrition Urinary and faecal incontinence Progressive weakness, fatigue, inactivity Unable to communicate meaningfully; little social interaction Fractured femur; multiple falls Recurrent febrile episodes or infections; aspiration pneumonia Many of these indicators are already present in patients with advanced dementia.

3. Ask Would it surprise you if this patient died in the next 6-12 months? NO

4. Plan supportive and palliative care Review current treatment / care plan, and medication Refer for specialist palliative care assessment if symptoms or needs are complex and difficult to manage Agree future care goals/ plan with the patient & family Plan ahead if the patient is at risk of loss of capacity Handover: care plan, agreed levels of intervention, CPR status Coordinate care using the GP/ primary care register Medications – review appropriateness of statins etc Consider alternative route –s/c, rectal, buccal Antipsychotics if no longer able to swallow – consider s/c haloperidol also an antiemetic caution EPSE Anticipatory prescribing Care plan esp for crises. DNAR forms.

EOLC in patients with severe dementia raises not only clinical issues but also difficult ethical considerations in relation to withholding or withdrawing treatment.

Treatment on average brings a patient to death in 33 hours Top doctor's chilling claim: The NHS kills off 130,000 elderly patients every year Professor says doctors use 'death pathway' to euthanasia of the elderly Treatment on average brings a patient to death in 33 hours Around 29 per cent of patients that die in hospital are on controversial 'care pathway' Pensioner admitted to hospital given treatment by doctor on weekend shift By Steve Doughty PUBLISHED:00:08, 20 June 2012 | UPDATED:14:20, 21 June 2012 19

The Alzheimer's Society believes that in the advanced stages of dementia, quality of life rather than length of life should be prioritised in line with the General Medical Council's guidelines on treatment and care towards the end of life (2010).

Decision making at the end of life MCA 2005 Professionals are not allowed to make decisions about quality of life – they are legally required to determine the best interests of a person who lacks capacity Must also involve the views of the carers Advance statement, ADRT, LPA

Decision making Caregiver burden is the most commonly studied topic in care of the elderly6 Caregivers transferred their feelings about poor quality of life on to patients7 Patients’ decisions cannot be presumed Study of 52 people in NH in Australia - 61.5% said they would want to be in hospital - 73% would want antibiotics 8

Decision making Very small % go on to the end in denial, and we need to accept but not collude in the need for some patients and loved ones to cope in denial. Fear – may continue in different guises throughout the course of the illness.

Aids to decision making Wishes of patient and relatives Clinical state of patient Evidence base about outcomes Ethical pros and cons The legal situation Dementia, Pace et al 2011 Be guided by the family and patient’s own past expressed wishes. BUT TAKE RESPONSIBILITY FOR ANY DECISIONS. Families are often in great turmoil so be sensitive to how much they can and want to be involved in complex decision making. Do not burden them unfairly. We as HCPs have the training, experience and detachment to judge the best means to arrive at a decision.

References Harwood. Dementia for hospital physicians. Clinical Medicine 2012;12;1:35- 39 Royal College of Psychiatrists. National audit of dementia in general hospitals. 2011 Morrison. JAMA July 2000:47-52 Bayer Death with dementia: the need for better care. Age and ageing 2006;35(2):101-2 Parsons et al Withholding, discontinuing and withdrawing medications in dementia patients at the end of life: A neglected problem in the disadvantaged dying. Drugs and aging 2010:435-49 O’Rourke et al (2004) Caregiver burden and depressive symptomology. Clinical Gerontologist, 27, 41-52 Arehart-Treichel (2004)For Alzheimer’s patients, life may be better than caregivers think. Psychiatric news, 39,14 Low et al. Treatment of recurrent aspiration pneumonia in end-stage dementia. Intern Med J 2003;33(8):345-9 Ferri et al Global prevalence of dementia. Lancet 2005;366:2112-7 Alzheimer’s Society. Palliative care/withdrawing and withholding treatment. The Gold Standards Framework Dementia, From advanced disease to bereavement, Pace V et al, Oxford University Press 2011

Questions